Quick post after first 3 hours sleep since early hours of Sunday. After answering all the subtle messages from my brain, I discovered an horrific truth which I knew would end up with a hospital stay, I spent a few hours with my son as planned. Then text my sister, think it's all fine now, emotions in place, to ask for lift to hospital. She drove my son home "sorry, my pain is just a bit much to take you this time".
Edited highlights - 3 hours in A&E, repeat details and history to 5 medics in 4 wards, 4 different beds. Admitted, neutropenic. Need surgery which is too dangerous with neutropenia, still not seen surgeon promised by Monday morning to confirm action plan. Not operating increasing risk of yet more infection of worsening degrees. Assigned ensuite single room due to bloods on death of another patient.
During stay have had to insist that no "being young doesn't mean I'll live, why do you think I'm curable when my onco says not" to one Dr (clearly Dr 2's handover missed out the palliative nature if neut killing chemo (0.9 by this point). In sobs of tears (mine) the penny drops. Suddenly I am "vulnerable and need all the support available". Support arrives in disguise of Occupational Therapist asking how I feel today "utterly miserable" "oh dear, have you been feeling that for long?"
Incredulous, I say, well since some time after discovering I'm incurably ill but worse since my discovery leading to admission. No I dont need someone to come help me wash and dress every day, I dont need devices to help me get out of bed, I have cooked and managed my own life since I was 16. Yes of course I can walk short distances and don't need a frame - WHY are you of the impression I'm 80 and frail? I had a shower and dressed thus evening, packed a bag fir a weeks stay, arranged transport to hospital, how can you think of me this way having just met me with NO view of my notes, no idea that I got up four times and dragged my drip stand to toilet in the last 2 hours? Oh handover notes said I need help? Yes MEDICAL, perhaps emotional, definitely surgical. She realised too late she should have assessed me before making assumptions, apologies and left me in even more tears.
My stay has been a catalogue of minor but continual errors. Worst - the 1st Dr insisting I tell him how long I've got to live in front of my sister, now fighting tears herself, who after 3 attempts realises I will NEVER ask for or adhere to any expiry date from one of his kind. What bloody difference does it make to my treatment? Sorry you only have 8 months left, no point helping you, cuts etc? Who knows. I'll elaborate for those who liked Fawlty Towers when I'm out of here,
because really, if you don't laugh, you may as well jump in your coffin.
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13 comments:
How awful.
Hi Loops,
What was the horrific truth, how did you know that you needed a hospital stay - I only ask from a selfish point of view so that I can keep an eye out...
How are you now...I want to ask what I can do to help but wondering what and how I can help...you may say you don't need my help or what could I possibly do to help you but just have a think as there must be something...are you on the green juice yet?
Much Love
T xxx
Tony as I said I'll mention when and if I feel up to it. It's hard enough trying to accept what's been happening, now surgeons will have to do their best to sort out the mess. In time, when it's been resolved I should be ok to talk about it. Specifically the way things are for me are female specific. I don't think you're in the same danger at all. If that heps reassure you?
Lisa,
Sorry for adding to the number of people who ask stupid questions.
I was just trying to find out if I could send you some wheatgrass :-(
T x
No Tony there's nothing upsetting about asking those questions - I'm having such a hard time telling medics what has happened still. I had to tell my sister and my mum and managed now to tell 2 girl friends. Only because they are women and can better understand why and how frightened and disturbed by it. I started my blog to keep friends and family informed - to stop 20 phone calls to my sister or mum or me from those who care and want good news.
Also I made it public for you, someone who has a similar diagnosis/treatment, I hoped to finally be that story of success, hope. It hasn't turned out that way but I certainly want to reassure you that you can never be in my current situation - if it seemed short blame 3 days of no sleep, no food, then 3hr here an hour there, general feebleness etc. It takes hours to post - I do it in sections but I feel I need to.
As for the WG I thought you meant my green drink, which I cannot even tolerate now I'm on chemo. I think Wheatgrass is off my list until chemo is over - vomit at smell of cutting it :-( I have stopped letting it worry me, I just meditate more to make up the balance. Stress has no place in my life, tho this hospital has done it utmost to make it fit!
Hey Loopster,
How are things with you...had the second dose yesterday and not too bad at the moment...leaving lots of hair in the sink and getting the bobble hat out ready for the snow and wind...very cold in Matlock with the snowing etc.
Just watching Zombieland on my laptop/skyplayer pretty funny if you see past the gore.
Much love
T xx
Hey there,
How are things with you? Thinking of you.
T x
Hi Lisa,
Are you back home yet or still in hospital?
Am thinking about you - hoping you are as well as you can be
Carole xx
Zombieland was brilliant!
I was given the option to come home for a few days before my operation which is now booked for Monday. There was some reluctance since I may struggle to get a bed on Sunday, but I'll have to take it easy post op so hoping to tidy the house a bit and pack properly.
I shall catch up on my "adventures" later today
I had a lazy day yesterday and still want quite up to typing, it was over a week after all a lot went on!
Carole I have already commented to a couple of people that I know I'll crumble when it's done, no matter that I cannot live in my current state. I hope that you are getting through that, even though this isn't my first time it's going to cut me up mentally as well as much as anything
The only thing that really really helped me Lisa was meeting Brian, the lovely anaesthetist, beforehand.
I 'knew' that he would take care of me.
Ask to meet yours if possible - it doesn't stop the op but it is somehow even slightly reassuring.
Mentally it's all still a struggle but as everyone keeps telling me, it's early days yet.
Be thinking about you Lisa and hoping all goes as well as it possibly can.
Much luv & gentle hugs xxxx
Hi Carole,
it's not the actual surgery, I've never been bothered by any of my operations, but then I've had 4 generals in the last 3 years alone and several more prior to that.
It's the fact that a transverse loop (not flat and flush as I'd hoped) stoma is going to be massive, much more visible than my little ileo. It's not knowing how I'll look until it happens, knowing the swelling will go down, but not how much, will my favourite clothes now be redundant, the new ones I got to replace the huge ones that hung off me. Yet another drain on my emotions and self image which is pretty much battered right now. Still, it can only get better after it's got worse with the initial shock of the op?
Are you feeling stronger yet?
Hi Lisa,
I had to look up transverse loop as wasn't aware of the difference before you posted above.
One step at a time lovely girl...don't decide that it'll be a huge problem 'sticky out problem' until it actually is.
You may find that as you are so slim it will reduce in size greatly once settled and your lovely clothes will still look great on you.
One step each day eh? xxx
I'm slightly stronger physically but mentally it's a longer struggle right now. Early days though.
Can you email me directly through the link on my blog and let me know the hospital and ward you'll be on so I can drop a card into the post for you?
Hugs Lisa - you are in my thoughts hun xxxx
You saw the youtube link then? I know I might advise someone to not expect the worse, but I have to trick myself into expecting the worst, get my head round that then anything else is a bonus, I can't do it the other way round.
Obviously I know about having a stoma the first time but still your situation is so different. I was mostly fascinated by the whole thing last time and I had more hope and there was a definite plan. I'm not good with "wait and see" - too much of a control freak I think :o)
How is your nurse support team and are you OK with supplies etc? Which bags are you using?
I'll only be in for 3 or 4 days if small op (does small mojo dance) or a week at most (assuming I don't do my usual trick of getting an unexpected complication), will send address.
I still checked up on your blog even in hospital you know - it's a two way thing. xx
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